Thursday, September 29, 2011


Peyton is 11 weeks old today.  This is a such a bittersweet thing for me.  Yes, I’m glad that she’s getting older, growing stronger, and most importantly getting healthier, but it still makes me sad thinking about how she’s been stuck in this room for 77 days now. 

Although I’m trying to stay positive, I’m getting really frustrated.  I spoke with her team of doctors yesterday and they told me that the possibility of her having to be here for another month MAYBE TWO is not out of the question!!  Her getting discharged all depends on how her body adjusts to the feeds.

They started feeding her this Monday and are increasing the amount VERY slowly.  Right now they are only feeding her via a nasogastric tube (also called an ng tube)- which is a tube inserted into her nose and goes down to her stomach. She is being fed this way so they can give her a continuous feed of a very small amount of breast milk to just coat her intestines and see how her body processes the food.  They started with 1ml going through the tube every hour for the first two days, yesterday they increased it to 2ml, and today they increased it to 3ml.  They even talked about letting her get a bottle tomorrow along with the ng tube feedings.  Thankfully so far her body seems to be handling the feedings well, but we will see what happens as they increase the amount.

Here are some pictures of her pre and post surgeries.

This picture is the day before they rushed her in for emergency exploratory surgery to find out what was going on with her belly. Not only is her belly completely distended, but the look of agony on her face is heartbreaking…I can’t even imagine how much pain she was in!

This is a picture of her ileostomy, The red circle on her belly is her actual intestine connected to the outside of her stomach. The other half is under the gauze.

This is what her belly now looks like-8 days after her reconnection surgery. They said the scar will get much thinner as it heals. The tube on her upper chest is her broviac. This is currently how all the nutrients she needs is getting into her body.

and here’s some fun ones I took of us today while we were bored…


  1. You have an army of people out here thinking and praying for you guys!!! She has such a strong little spirit...I will continue praying that the increase in feeds go as well as everything else has been! Keep up the good work, Peyton!!

  2. You and your family are in my prayers daily. Peyton looks like she's getting better :) She has to be one of the most adorable babies i've ever seen. I hope she continues to get stronger and can come home with your family soon. You have suck a fighter!!! Tons of Love your way <3

  3. Intestinal healing after a resection takes so long and it is so frustrating! It is a constant road of ups and downs. Sending positive thoughts your way in hopes you are all home as a family soon! It is great they are going to try and allow her oral feeds. Just make sure they don't continually keep her tube feed with no oral feeding down the road to avoid oral aversion! One less thing to deal with as she gets older. I had a nurse talk to me about that when Ben spent his first 5 months in the hospital after his resection. She had seen that happen with some children who had bowel resections. I am so glad I stuck to my guns! He loves food and
    has no issues with eating.You are doing a great job with Peyton! Keep on fighting the good fight and try to stay sane in the hospital! Hugs, Kati Pannecouck



Related Posts with Thumbnails


17 months old (1) 20 week ultrasound pictures (1) 24 week ultrasound pictures (1) 2nd Annual Halloween Playdate (1) 30 weeks pregnant (1) 32 weeks (1) antibiotics (1) apples (1) applesauce (1) avoided a hospitalization (1) baby girl (2) Baby Girl Update (7) baby girl update (2) babysitting (1) belly pics (2) Big Boy Room (1) breastfeeding (1) breathe sticker (1) breathing treatments (2) bronx zoo (1) bulldozer (1) camera suggestions (1) Cereal (1) cf awareness video (1) cf cholocate chip cookies (1) cf mamas (1) cf medications (1) cf mommy skills (1) cf sucks (1) cf surgery (1) CFRI Conference San Francisco (1) chest cold (1) Christmas Morning 2010 (1) Christmas Photo Shoot (1) cirpro (1) Clinic Visit Update (3) Coupons (1) cpt (1) current medication and treatments (3) cvs (1) Cystic Fibrosis Masquerade Ball (1) date night with Rad (1) day trips (1) delta f 508 (1) dress up (1) Easter 2011 (2) Easter Egg Hunt (1) enzymes (5) exercise during pregnancy (1) extra treatments (1) favorite pics of 2010 (1) feeling defeated by cf (1) Finding out the cf dx for the SECOND TIME (1) fire trucks (1) First Birthday (1) flash back (1) Flash Me Friday (5) florida getaway (1) flovent (1) fun filled weekend (1) fun photos (1) fun times at the park (1) fun weekend photo's (1) Fundraiser (1) fundraisers (3) fundraising (2) georgia (1) getting rid of toys (1) Getting the amnio (1) good fortunes (1) great strides (3) halloween parade (1) healthy at last (1) helpful mealtime strategies (1) hiking (1) hospitalization (5) hospitalizations (1) How Radek got his name (1) hypertonic saline (1) hypertonic saline treatments (1) It's a Boy (1) it's a boy thing (1) jens wedding (1) July 2010 Clinic Visit (1) kind words (1) leaving for the beach (1) lessons learned (1) Light Up Shoes (1) loving toddler life (1) meconium illeus (1) minnesota (1) Mohonk Mountain House (1) monster jam (1) monster trucks (1) Months 1-12 (1) Musikfest (1) My Favorite Things (1) new cf clinic (1) new treatments (1) ng tube (1) nice weather (1) nicu (1) Nursery (2) October 09 (1) Our First Getaway (1) our trip to the pumpkin patch (4) outrun cf (1) outsmarting Radek (1) peyton is FINALLY home (1) Peyton's new hospital room (1) peytons 7 month pictures (1) Peytons newborn photo's (2) Peytons recovery (22) photo booth fun (2) photography contest (1) PICC line (1) pictures from the beach (1) Pictures from the NICU (1) playing in the snow (1) playing outside (1) please touch museum (2) plus side of treatments (1) Poop (1) pregnancy cravings (1) pseudomonas (4) pumpkins (2) punishment (1) rad and his cousin (1) Rad Meeting Peyton (1) Rad's trip to the Zoo (1) Radek and Santa (1) Radek Loves (1) radek loves to breathe logo (1) radek's current health status (14) Radek's Gene Mutation (1) Radek's Large Appetite (1) Radek's Sick :( (1) Radek's third hospital admission (1) Radeks Birthday (1) Radeks impression of our Mean Cat (1) Radeks list of demands (1) Radeks LOVE for Cars (1) Radeks WUS THAA phase (1) Rads first time using chopsticks (1) Rads Second Birthday Party (1) rainy day fun (1) raisins (1) recipe (1) salty skin (1) scuba diving (1) Setbacks (1) sickness (1) smoking (1) snacks (1) soap box derby (1) spring is right around the corner (1) stomach bug (1) swimming (1) synagis injections (3) team radek loves to breathe (1) thankful for cf (1) thanksgiving (1) the official cf dx of my unborn child (1) the possibilty my baby could have cystic fibrosis (1) the time out bench (1) Things we do for our kids (1) this time last year (1) three days to get better (1) tobi (1) trampoline to help clear mucus (1) vacation (1) Valentines Day (1) vest (1) weaned from the pacifier (1) Wordless Wednesday (8) worst week ever (1) Xopenex (1) Yo Gabba Gabba Live (2)

Total Pageviews